TRIPLE POSITIVE GROUP

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  • dechi
    dechi Posts: 110

    So sorry Trisha-Anne that you have to go through this again. The same thing happened to me. I was almost 8 years out when I got diagnosed again. You will get through it again. Some things were easier because I knew what to expect and could prepare for it (ie constipation). Lots of different options the 2nd time around. Of course, this site was a God-send the 2nd time around. Didn't know about it in 2003. Wish I had!

  • suladog
    suladog Posts: 837

    Trish-Anne,

    Sorry you're doing this again. I was trip neg 25 yrs ago.. Then last year in the remaining breast, trip pos.

    It's a bummer to have to do this twice...hope everything w/ the surgery and port goes smoothly.

  • LindaKR
    LindaKR Posts: 1,304

    TonLee I'd talk to my oncologist if I were you...I wouldn't use premarin anything at this point.  Especially since my MO wants me on the AI for at least another 5 years, I certainly wouldn't add estrogen products.


  • zjrosenthal
    zjrosenthal Posts: 1,541

    I would not use Premarin. It is,an estrogen and my cancer like yours is ER+. It feeds on estrogen. Also avoid soy. Love, Jean

  • rosesrx
    rosesrx Posts: 264

    Trisha Ann Shell shocked indeed. Mind racing and numb at the same time. Peace and prayers for you and caregivers.

  • ashla
    ashla Posts: 1,566

    TonLee

    Think you came to the wrong place to ask your question.

    Nobody here has sex;)

    Only kidding... Nice new avatar . Hope you are doing well otherwise:)

  • LindaKR
    LindaKR Posts: 1,304

    Just to confirm, we do have sex, and I use coconut oil, liberally, helps the pain and dryness.  Don't want to give too much info.   

  • KateB79
    KateB79 Posts: 555

    Coconut oil is great for sex (unless you're using condoms), and vitamin E oil makes an excellent daily moisturizer for the lady bits.

  • ang7894
    ang7894 Posts: 427

    Drug might help breast cancer patients avoid heart damage

    By MARILYNN MARCHIONE
    AP Chief Medical Writer

    ORLANDO, Fla. (AP) - Many cancer treatments have a dark side - they can damage the heart. New research suggests this risk might be lowered in women with breast tumors if they take a heart drug as a preventive measure during their cancer care.

    If confirmed in wider testing, this could improve care for thousands of breast cancer patients in the U.S. alone each year, plus other women and some men who also get these treatments for other types of cancer.

    As it stands now, cancer patients are referred to cardiologists after certain cancer drugs or radiation treatments have already weakened their hearts. Special clinics are springing up in hospitals to take care of the growing number of cancer survivors with this problem.

    "If you wait until the disease has occurred, it may be too late" to do much good, said Dr. Javid Moslehi, who heads one such specialty clinic at Vanderbilt University. "We in the cardiology community have to do a better job of preventing cardiac disease rather than jumping in" after damage has occurred.

    He had no role in the new study, which was done in Norway. Results were discussed Wednesday at an American Heart Association conference in Orlando.

    Radiation treatments can harm arteries, making them prone to harden and clog and cause a heart attack. It also can cause valve or rhythm troubles. Certain cancer drugs, such as Herceptin and doxorubicin, sold as Adriamycin and other brands, can hurt the heart's ability to pump, and lead to heart failure.

    "We give poison with a purpose," because it fights cancer, but heart problems can be "one of the dark sides of that," said Dr. Ann Partridge, a breast cancer specialist at the Dana-Farber Cancer Institute in Boston.

    One of her patients, Christine Ells, 36, a teacher in the Boston suburb of Quincy, developed a heart rhythm problem from several drugs she was given to treat the breast cancer she was diagnosed with at age 27.

    "The risks of these drugs are crazy," she said, but "it was more important to cure my cancer."

    The new study aimed to prevent cardiac side effects. Led by Dr. Geeta Gulati of Akershus University Hospital in Lorenskog, Norway, it involved 120 women with early-stage breast cancer and tested two drugs long used to treat high blood pressure and heart failure - candesartan and metoprolol. The drugs are available as generics and cost less than a dollar a day.

    Women were given one or both drugs or dummy pills, and their hearts' pumping capacity was assessed at various time points with MRI scans.

    Heart damage worsened in the group on dummy pills. Metoprolol did not prevent heart decline but candesartan did, although the benefit was small - an improvement of 2 percent to 3 percent in pumping strength compared to the placebo group.

    "The major issue is, the effect was very modest," so whether that prevents heart failure from developing down the road is not known, said Dr. Bonnie Ky, a cardio-oncology specialist at the University of Pennsylvania.

    It's also not known whether things get better or worse over time, or whether a different drug in the same class would work better.

    Still, it's a first.

    As cancer patients are living longer, the risk of dying from heart problems actually exceeds that of cancer, so it's important to prevent damage, Ky said.

    The University of South Florida has a federally funded study underway, testing drugs to prevent heart failure for women on Herceptin, that may help answer some questions.

    Meanwhile, some doctors already are considering this tactic, especially in women taking drugs known to harm the heart or who already have some risk factors for heart problems.

    "I get calls from the oncologists saying, 'she's at high risk, why don't we just start it?'" Dr. David Slosky, a cardiologist at Vanderbilt, said of preventive treatment.

    "They're pretty benign," he said of the heart drugs the study tested. "The threshold, if somebody's got a high-risk cancer, will be pretty low" to use them preventively, he said.

    ___

    Online:

    Heart advice for cancer patients: http://www.cardio-onc.org

    ___

  • wabals
    wabals Posts: 192

    Great article!

  • Mommato3
    Mommato3 Posts: 468

    My cardiologist told me in June that he thought this was going to be common practice. He gave a presentation to the oncologists where I'm treated. I'm on the lowest dose of heart meds to keep my heart from remodeling. My last echo looked good but the plan is to keep me on for another year and then stop.

  • I just wanted to join a blog hoping I could meet other women in their 50s 60s that are triple positive. I've seen so many young women going through this that it scares me more for my daughtersvthan I was at my diagnosis. Hope some one reaces out. I'm not a complainer, pretty positive ( no pun intended). Would just like to relate to my age group.

  • LindaKR
    LindaKR Posts: 1,304

    Hi Loj-57 I was 54 when I was diagnosed 5 1/2 years ago - just turned 60 (YIKES) in September. 

  • hi, I was 63 when diagnosed, and yes it is scary that so many are younger and younger developing BC . I liked the article on the heart problems and the cancer drugs. My mom had CHF and so did her dad. Now that I am taking ARimidex for the hr2 +, I worry about heart issues. So far both echo's have been fine, due for another in January. No one has mentioned this, but do you think I should seek out a cardiologist because of risk factors? Dad died of coronary, so it's sort of a double whammy on the heart issues, BUT, I have been a walker most of my life, age 40's about 3-5 miles 3 or 4 times a week. Now that I am older have slowed quite a bit, but can walk about a mile on a good day. Any thoughts?

  • LindaKR
    LindaKR Posts: 1,304

    Are any of you having regular echos while on the aromatase inhibitors only?  I think I'll ask my docs about that, I didn't realize, until now, that there was an increased risk of heart issues with them.  SillyHeart Because of all the pain issues I have it's hard to exercise too.

  • ashla
    ashla Posts: 1,566

    On Twitter, I asked Dr Moslehi....the doctor cited in the article...if you need follow up cardiac observation if your EF was normal at the end of treatment. He said yes. The risk continues and there are no warning signs in many instances.

    Talked to my MO about it yesterday. Going for a checkup.

  • LindaKR
    LindaKR Posts: 1,304

    THanks ashla - I'll be talking to mine to!

  • ashla
    ashla Posts: 1,566

    BTW, on the subject of cardiac care for those of you who may be unaware there is a new field called cardio- oncology. These doctors..Dr Javid Moslehi being one of the first and foremost...specialize in treating patients who have had and have been treated for cancer.

    In my search, they seem to be in short supply but it is worth asking around to find one if possible.

  • Wow, I thank you for the info. I just started arimidex. Had no idea about heart issues

  • ashla
    ashla Posts: 1,566

    jumbled bamboo

    My understanding is that the risks are relatively low with all of them... Herceptin, rads and with the anti estrogens but they are worthy of vigilance.


  • Hi Cindynic,

    We seem to have a similiar diagnosis......I will be starting chemo Dec 7, I've chosen to take the time off work because I work with children with disabilities and behavioral issues. If I had a less physical job, I think I would be able to work. I will use STD to still have part of my income. My MO said my side effects with taxol w/herceptin will be minimal, other than losing my hair...which I'm using cold caps to help keep hair!

    G/L to ya!!!

    Jodi

    Smile


  • specialk
    specialk Posts: 9,299

    loj57 - I was diagnosed 5 years ago at 54, am 59 now.  We're here!

  • my MO shut my periods down with Lupron. I'm on ovarian suppression for at least two years

  • had Lupron shot 2 weeks ago and started my first period since chemo today what's up with that?! Still not on my aromatase due to insurance being idiots hopefully get it next week

  • jodes001 - my MO did reassure me on Tuesday that I would be able to fully function throughout my whole treatment.....I'll just have to take it a day at a time but I am a little skeptical. There are days I can work from my home so that will help. Looks like our timelines are pretty similar too!!

    BS was not happy with my margins so she is going back in Nov 24 - port goes in Nov 20th then hopefully I am ready to get the rest of this treatment started. It's crazy the # of doctors appointments that I have on my calendar - more in the past month than the last 10 years combined!!

    I am going to look into the cold caps......my hair is thin enough on its own. Even a little hair loss will make a dramatic difference Smile




  • LindaKR
    LindaKR Posts: 1,304

    CyndiNic  That's pretty positive thinking of your MO.  I would definitely take it one day at a time and if you need to take the time off of work do.  My regimen was a little different, I tried to work through the whole thing, that did not happen.  My one regret is that I wish I had just taken off of work for the whole thing, my company did have Short Term and Long Term disability.  Every one reacts differently to the treatments some breeze through, some don't.  I found that, even though I lost my hair, I generally didn't look bad, so when I did go to work they just figured that I could do it all, I tried and tried, but with each treatment I was less and less able to work, my MO said he was surprised that I worked as long as I did.  Good luck, wishing you minimal side effects!!


  • Hi Cyndinic

    I just finished TCHP yesterday. I did work throughtout but it got more difficult the further I got into it. I have a desk job and can work from home. But my job can be stressful especially in 4th quarter of the year so that did not help. I had treatments on Thursday, went to work on Friday. I felt horrible on Sat and Sun. Starting after the 4th treatment, I started working 1/2 day on Monday. Like LindaKR said, make sure to do what works best for you and make sure your management understands your limitations. I know more than 40 hours a week is the norm at my job and I had to tell them I could not do that. Good luck

  • wabals
    wabals Posts: 192

    You would qualify for the ATEMPT trial. You should look into it. 75% chance to get tdm1, no hair loss and minimal side effects. Is being done at all major cancer centers

  • PatinMN
    PatinMN Posts: 784

    CyndiNic, I did 12 weekly taxol + Herceptin, and used cold caps. I continued to work full time, except for infusion days - because of cold capping I took that whole day off. There were a few days when I had to stay home for a few hours to remain close to the bathroom... But for the most part I felt fine. The cold caps work really well with weekly taxol.

  • Thanks for posting the article ang. I am one of the "rare and unusual" with a toxic side effect of herception. My left ventricular ejection fraction was 60ish at base line. Dropped to 50s. Took a break from herception. Moved up. Started again and dropped to mid-20s. I also had adriamycin AKA The Red Devil. Thus--I am banned from herceptin forever and a day. Only completed 17 week doses. I am on cardiac drugs, have tried to wean several times, but my shortness of breath becomes overwhelming. Now that I am on my 2nd cycle of IV iron I run out of air constantly.

    I recommend anyone on herceptin have a cardiac consult. And maintain contact with the cardiologist. One of my scariest events was during a non-stress stress test (I did not run on the treadmill-was on a table and injected with drugs) and suddenly I was surrounded by those in long white coats. I asked one of the docs to move a bit so I could see the monitor and he gave me a look of WTF. My unfiltered response-well crap. All of you are here because you think I might crash and burn. Not a fun day. Call cardiology and have a baseline screen. Please.